Friday, August 1st, 2008 by Deb Schwedhelm
When I showed up to the Mikulak house yesterday, the kids had just come home from camp and were watching cartoons on the couch. One thing that I’ve noticed is that Max’s throw up bowl (tupperware bowl with his name on it) seems to always be by his side and when it’s not, he asks his Mom to go get it. Also note his special couch blanket.
Then I hear:
Kitty no. That stays outside.
I go over to see what Naboo has and this lizard comes wriggling towards me (I hate bugs, lizards, etc.) and I end up jumping on the table…literally. Max came running to see what Naboo was up to too. Seeing what Naboo had done and watching his Mom chase around the lizard with a paper towel in hand made Max laugh. Melis caught the lizard and threw it back outside. Then I tried to get a photo of Max with Naboo but Naboo had other things on his mind (most likely catching his next lizard).
Then the hospice nurses arrived to change Max’s button (g-tube), which has been leaking, and to access his port for lab work. Melis decided that the best place to do it was in Max’s bedroom. Max has trouble walking up the stairs and needs Mom’s help.
At the top of the stairs is an entire wall of Max and Hannah, beginning at about age 2. (Nicky hasn’t quite made it to the wall yet). This is one photograph on that wall. Not sure what age Max is here.
This is the hospice nurse talking to Melis and Max about what she’s going to do. She kept trying to talk to Max, asking him questions, but he wasn’t much up for answering. I’m sure he just wanted her to do her thing and get it over with.
The nurse showing Max his new g-tube.
And then it was time for the g-tube swap out. The nurse removes the water that is inflating the g-tube balloon, which holds the g-tube securely in place. She removes the old one and puts the new one in the hole. And then inflates the balloon. It all happens very quickly and seems to be with no pain.
I thought it was neat that the nurse talked to Max a lot about his g-tube and asked him if he wanted to see the old one. He was pretty excited to see it. She also let him see what it’s like with the balloon filled. Melis said that in 3 1/2 years of having his g-tube, he never got to actually see one.
Then it was time for the port access, something Max doesn’t like. Mom helps him get his shirt off.
And the nurse prepares her equipment and talks to Max about what she’s going to do.
At one point, Mom had to step out of the room for a minute and the nurse was talking to Max. I think she said that she had everything ready and Max said, I just need to hold my Mom’s hand. I just need my Mom. She said she would never start without his Mom being there.
And then it was time to access Max’s port. About 30 minutes prior, Max had a cream put on that numbs the area a bit. I’m not sure how well the cream works but I know it’s used a ton with kids. Max never likes his port being accessed but Melis said that he reacted a bit worse than usual yesterday.
After the blood draw, Mom asked Max if he wanted a band-aid. Yes, he wanted sponge bob.
After everything was done, what did Max want? One of his airplanes, of course. I think it was an F-15, to be exact.
And off he went.
It’s hard for me to comment on photos (other than describing the moment) or even share my thoughts in general, as I worry about not saying things right or offending someone. But, one thing that I’ve been thinking about is how we hate to see our children in the hospital or in pain once a year, once every couple years. These parents often see their children in pain or in the hospital numerous times a week. I just can’t imagine. I know you just do it. You do it…you remain strong…for your child. You hope with everything you have to hope with. You fight with everything you have to fight with.
The Mikulak family will be at Disneyland all next week. The next time I shoot Max will be next Sunday, when I’m going to do a formal family session for them, at the beach. I have been encouraging Andy and Melis to do family photos for a while now and glad that we are finally going to do so.
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